Do Not Resuscitate!

Do Not Resuscitate! These are the three medical words I came to learn and understand in my life. At the age of 18, I was diagnosed with cancer of the bone, called amelioblastoma. Only 54 persons had this prior to me. I had all kinds of symptoms. I was in constant excruciating pain, had bone grafts, and then was told I had Stein Leventhal Syndrome, Sjogrens, Arthritis, and Fibromyalgia. Over time, I had suffered three miscarriages and had one daughter living. Later I had to have a hysterectomy because the muscles collapsed in my abdomen. I was finally diagnosed with “SLE”. When I asked what was done research wise for the disease I was told from a Department Head that it was not being funded or researched since women were more prone to get the disease and that it was considered a “Black Woman’s” disease. This infuriated me that funding was based on who the politicians deemed important. I was placed on Prednisone, Imuran, 6MP, and a battery of other drugs. My body was rejecting me. Through this, I still went to college. However, I still had severe weakness, muscle wasting, and brain fog, sudden swelling of my extremities, migraines, burning pain in the joints and skin. This made me nauseous due to the intensity. My SED rate would go sky high, along with a facial rash, alopecia, and renal failure. I developed a scary heart condition and ached until I cried in pain. I was admitted to the hospital several times and I developed allergies to many of my meds.   At times, I could barely get out of bed and my father would have to carry me. I was later diagnosed with granuloma of the lung and had a lobectomy. I had to give up my job as a floor nurse and find another job in the medical profession. In time, I had to go on disability. My disease took it’s tole on my personal and social life. When Crystal (my daughter) was just a child she helped, worried, and looked after me. My family tended to all my needs, especially my daughter. My life was barely worth living. My daughter at 16 did my bills, banking, cooking, and housework. Recently I have had massive blood loss with 26 transfusions, pneumonia several times, and weakened bones leading to three surgeries removing my jaw and two broken arms. I have had 13 hospitalizations with surgeries on the mandible, and grafts again due to a mysterious infection. Once again, those DNR words came back to me. I was asked multiple times over 18 months. In the meantime, my dedicated daughter, married with three children developed a rash on her face and chest. She had generalized edema, and aches leading to bad pain. She too now has been diagnosed with SLE. I now see the worry over her face that was once on mine. Her disease has settled with emphasis in her intestines. This disease is not just an illness; it is a life altering, shattering nightmare especially looking back on it at age 61. The pain is so great it sometimes will make you faint. I can barely walk and my joints are constantly inflamed. I suffer severe headaches and my eyesight is poor due to glaucoma. I have vasculitis and neuropathy of my extremities, and weight gain with the steroids. I have a medication list too long for one person and a drug allergy list to match. I cannot sleep all night with my back, hurting if I am lying in one position and I take naps throughout the day because of this. I am grateful for guest, everyone else has their life to live and I am no longer in their picture. . I have no future to aspire to now. I have to live day-to-day contingent upon how I feel when rising. This is living and existing with an autoimmune disease.